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December 1, 2017
9781421423906
English
160
56182
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0.39 Inches (US)
.6 Pounds (US)
$29.95 USD, £22.00 GBP
v2.1 Reference
Electronic book text
December 1, 2017
9781421423913
9781421423906
English
160
56182
9
9.00 Inches (US)
6.00 Inches (US)
$29.95 USD, £22.00 GBP
v2.1 Reference

Living with HHT

Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

Hereditary Hemorrhagic Telangiectasia (HHT) is a rare genetic disorder that causes blood vessel abnormalities in the nose, skin, gastrointestinal tract, lungs, brain, and liver. Nosebleeds are the most common symptom of HHT, but abnormal vessels in other organs, if they are not diagnosed and treated, can lead to serious medical complications, including stroke, hemorrhage, anemia, and brain abscess.

Psychologist Sara Palmer, who has HHT herself and is an expert in helping people cope with health conditions, draws on current research as she thoroughly describes the symptoms of HHT, explains how the diagnosis is made (and often missed), and details treatment options. While addressing the medical aspects of HHT, Palmer also reveals how people affected by the disorder can maintain their emotional health, take care of family members, and live life as fully as possible.

Enriched with illustrations, personal stories of people living with HHT, a glossary, and contact information for the HHT Centers of Excellence (which provide coordinated medical treatment for people with the disorder), Living with HHT is a complete resource for individuals with HHT and their families. This guide is also essential for health professionals seeking more information about this underdiagnosed disease.

About the Author

Sara Palmer, PhD, is a psychologist and an assistant professor in the Department of Physical Medicine and Rehabilitation at Johns Hopkins University School of Medicine. She is the coauthor of Spinal Cord Injury: A Guide for Living; When Your Spouse Has a Stroke: Caring for Your Partner, Yourself, and Your Relationship; and Just One of the Kids: Raising a Resilient Family When One of Your Children Has a Physical Disability.

Endorsements

"A must-read for patients and health care professionals seeking information about HHT, an uncommon disease diagnosis. Families will find answers in this thoroughly researched resource, learn about HHT’s psychological impact, and discover coping strategies for living a long and happy life as they navigate their medical journey."

- Marianne Clancy, Cure HHT/HHT Foundation International Executive Director

"I strongly recommend this HHT guide to patients, families, and doctors. It provides a wide range of useful information for both the newly diagnosed and veterans. Patient stories give it a refreshing human touch, and the author’s profession combined with her personal experience make it a uniquely informative book."

- Alyson Abbott Conger, Cure HHT Board Director, person with HHT

"This is an outstanding, informative book. Covering medical, social, and emotional aspects of HHT, this work tackles everything a patient may encounter when living with HHT. In addition to being a valuable resource for patients, all physicians could benefit from research and understanding of this disease. I highly recommend it."

- Sally E. Mitchell, MD, Johns Hopkins HHT Center Medical Director

"This book is packed with tons of useful information such as the most effective treatments for nosebleeds and how to deal with insurance companies.  Dr. Palmer cuts through the jargon of HHT to share strategies for the diagnosis and management of HHT—helping to convert disability and fear into physical treatment, emotional well-being, and hope."

- James Gossage, MD, Cure HHT Medical Director

Reviews

"This book is an excellent basic overview of HHT. It describes the condition, the difficulties often found in diagnosis, current and potential future treatments, as well as emotional and social effects for both patients and their families along with coping strategies. Throughout, the ability to live well with knowledge and appropriate care is emphasized."

- Jeffrey Pollak, MD, Katharine Henderson, MS, Department of Radiology and Biomedical Imaging, Yale School of Medicine, New Haven, CT - Journal of Radiology Nursing
Johns Hopkins University Press
A Johns Hopkins Press Health Book
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9781421423906 : living-with-hht-palmer
Paperback / softback
160 Pages
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Other Titles by Sara Palmer

Just One of the Kids

Kay Harris Kriegsman, Ph.D., and Sara Palmer, Ph.D.
May 2013 - Johns Hopkins University Press
$52.00 USD - Hardback
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$21.95 USD - Electronic book text

When Your Spouse Has a Stroke

Sara Palmer, Jeffrey B. Palmer, M.D.
Jun 2011 - The Johns Hopkins University Press
$48.00 USD - Hardback
$21.95 USD - Paperback / softback
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Spinal Cord Injury, second edition

Sara Palmer, Kay Harris Kriegsman, Jeffrey B. Palmer, M.D.
Apr 2008 - The Johns Hopkins University Press
$48.00 USD - Hardback
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Déborah Ducasse, MD, and Véronique Brand-Arpon, MA - translated by Alison Duncan
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The Eye Book, second edition

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Apr 2021 - Johns Hopkins University Press
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Searching for Health

Kapil Parakh, MD, PhD - with Anna Dirksen
Apr 2021 - Johns Hopkins University Press
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edited by Colleen A. Morris, M.D., Howard M. Lenhoff, Ph.D., and Paul P. Wang, M.D.
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Mendelian Inheritance in Man, twelfth edition

Victor A. McKusick, M.D. - with the Assistance of Stylianos E. Antonarakis, M.D., Clair A. Francomano, M.D., Orest Hurko, M.D., Alan F. Scott, Ph.D., Moyra Smith, M.D., Ph.D., David Valle, M.D., and Others
Jun 1998 - Johns Hopkins University Press
$380.00 USD - Hardback

Cultural and Ethnic Diversity

edited by Nancy L. Fisher, M.D., M.P.H.
Sep 1996 - Johns Hopkins University Press
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Can Fixing Dinner Fix the Planet?

Jessica Fanzo
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Behind the Mirror

Jeanne Simons - as told to and with commentary by Sabine Oishi, PhD - foreword and afterword by James C. Harris, MD
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Cancer with Hope

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